This will be my last post for CFS Squared – Tales of CFS. I have enjoyed writing here, for the past two years. But it’s time for me to move on now.

I must say, that this last word stuff is a little daunting. I kind of want to sneak away – and leave you with fun and quirky posts. But, I owe more than that to all of you, and to myself.

On more than one occasion, I have written about Do No Harm. I am going to share a little secret with all of you. Writing and/or following a health blog about chronic illness eats away at the energy you have. It most certainly eats away at mine, which is why I don’t read illness related news blurbs or other blogs. Spending so much time thinking about your illness and how others cope = self harm.

What we should be doing is enjoying life. We should be singing songs to our friends on the phone, hosting dance party in our living rooms, reading Dr Seuss to our favorite 3 year old, playing catch with our dog and his best tennis ball, and throwing fancy dinner parties where we serve pizza and KFC with very expensive wine.

We need to savor the small stuff. Stop analyzing every pain and cough.

Sure, reading about how other people cope with their issues can be somewhat helpful – but this journey is about learning what works for you. My tricks won’t work for everyone. Just like yours won’t always work for me. The best thing to do, is to get out there, and start figuring out what helps. The only way to do that, is to just do it. Be your own Nike advert.

Reading about recent developments for Chronic Fatigue Syndrome or Fibromyalgia, is not going to help you get well. The latest drug may make life slightly easier for a little while, but will most likely become less effective. I will say one last thing. And this will be the most important advice that you will hear….

Get out of your head!

Now go outside and have some fun!

It’s been a pleasure.

**Picture Source - flickr

Post from: Blisstree

The Swan Song

The last few weeks have been difficult ones for me. I have had some heinous cough- that is not really going away. I have all sorts of mono symptoms that haven’t really been going away. My skin has been peeling like crazy. And some other stuff has been brought to the surface, that I am not quite ready to divulge on here (don’t worry- it will get under control). Due, to the chest cough, and the skin peeling thing, it has been suggested that I give up dairy products. Remember when I tried to give up coffee. This is pretty much as hard as the coffee sabbatical. I can give up cheese, and ice cream (no problem), but I need milk, if my coffee is too strong….and I am having a very difficult time giving up yogurt. This also means, that I must give up cereal (because there is no way that I am eating it dry).

A week or two ago, I came up with the plan to try milk of different sources. I already know that soy milk will not work for me. In my mouth, it tastes terrible (unless its chocolate)- and besides, it gives me headaches. The only form of soy that I can tolerate is the edamame bean. Then comes the rice milk. And I may as well be drinking ground up chalk powder mixed with water. This stuff is vile.

But yesterday, I happened to be in the neighborhood upscale grocery (the one that sells the grapples) and discovered Almond Milk. While, this milk doesn’t taste like actual dairy milk. It doesn’t make me gag either. There is a hint of almonds in the flavor. While I do not think I could drink this milk straight up. I do think I could tolerate this milk in my coffee. I also discovered that the coffee flavored almond milk, gives my morning coffee a little extra kick!

Anyway, its not a bad alternative – if the real dairy stuff has been banned from entering your body. Now, if I could just find a yogurt substitute.

**Picture Source – flickr

Post from: Blisstree

Almonds – A Good Source of Milk?

Post from: Blisstree

How to Be Happy According to Jack Lalanne

Now lets get down to business.  CFS Squared is of course about Chronic Fatigue Syndrome, and all of the stuff that goes with it (good and bad), and there is a lot of good that comes with this illness.  For the most part, I write about my personal journey with this illness.  I share what works for me, and what doesn’t.  Sometimes I write about the happenings in the Chronic Fatigue world, but most often I get myself into trouble, when I do that so I tend to shy away from hot topics.  If you have a topic that you would like to see addressed, please shoot me an email to laura@b5media.com and hopefully I will be able to write my take on something that you would like to see.

There are some things that CFS Squared is not.  CFS Squared is not written by a medical professional.  There is a disclaimer that can be found on the sidebar.  I will always suggest that you talk things over with your health care practitioner before making a decision on something that you have read here.  What has worked for me, may not work for you.  Please understand that we are all different, and our illness varies between person to person.  The same goes for commenters.  Any comment that you have read on this blog, can not be taken as advice from a healthcare practitioner. These are people living with the illness, just like you and me.  There is a big range of how we each deal with CFS as individuals.

CFS Squared is not a forum.  I encourage comments, and I applaud readers for reaching out to each other via my blog posts.  Sometimes a topic that is covered, can get some pretty enthusiastic responses, and while I think that is fantastic – people who subscribe to comment feeds, can get more than a little overwhelmed.  I just think there is a better medium out there to communicate on topics with like minded individuals.  For instance, there are many forums on topics such as chronic illness or certain medications.  Support groups can be found everywhere (and this includes online groups). If you can’t find one that is suitable, you can try setting up your own.  There are lots of applications available.  Even Facebook will allow you to set up a little something.

Like I said, I don’t want to discourage comments. But I also don’t want the message of this blog to get lost.  In case the message has already gotten lost, let me reiterate it again.  CFS Squared is about living positively with a chronic illness.  It is a journey on how to go from living in your pajamas to regaining a positive life.

Thank you for your continued support. I appreciate all of you.

Post from: Blisstree

CFS Squared Is….

Your doctor gives you a few options:

• suggests you stop working, and implement the 50% rule, gives you a schedule of medications to take everyday
• gives you just the meds
• tells you to continue doing whatever you are doing, but make lifestyle changes
• refers you to a psychiatrist
• says that there are various alternative therapies that you should try, that can help

What would you do?  When I was first diagnosed, I followed the advice to follow the 50% rule, and take medication.  Now (keep in mind hindsight is 20/20 – and I am A LOT more informed these days) I would follow the combined advice of continuing to do what I was already doing, see a therapist, and seek out alternative treatment.

If all routes can lead to the same result – and they can (for many)- why do you choose your method?

I  know lots of people disagree with my reasoning (meds – bad!) – and I think its cool that they do.  Please leave a comment telling me why you feel differently….or why you agree?

Post from: Blisstree

CFS – You Have a Choice

How many people have seen an ad on television for prozac, ambien, or lyrica- and have convinced themselves that they need these drugs. They then go to their doctors and ask to be put on them. Do the doctors listen and explain why you do or don’t need these pills. Or do they just grab their prescription pad. You should think about this.

I found an excerpt of a movie called “Big Bucks, Big Pharma” on YouTube. It’s gotten me to think about some questions that I have had about the motivation of doctors and patients (and drug companies). I encourage you all to watch it. It is interesting. Perhaps many of us will discover, that we aren’t really ill….or maybe that these pills are keeping us ill. Advertising is slick these days. Be aware!

Please let me know what you think.
**Thanks to Chris for telling me about this video

Post from: Blisstree

Why Do You Take Pills For CFS?

So the title of this post, is slightly misleading.  I don’t think that there is a magic age where depression stops being an issue for people.  However,  a study done by Dartmouth and the University of Warwick suggests that depression peaks at the age of 44.

It is said that only in a persons 50’s do most people emerge from a dark depression. 

So if depression, is a part of your CFS condition- how does this make you feel.  I suppose if you are already nearing the magic number of “44″ you would be happy with this news.

For those of us who have a bit to go before we reach our forties or fifties – this news is a tad depressing.

**Picture Source – flickr

link via boingboing

Post from: Blisstree

Depression Ends at 45

• Ambien
• Zopiclone
• Valium
• Zoloft
• Xanax
• Donormyl

This is the list of prescription drugs found at the scene of Heath Ledger’s apartment, at the time of his death. I have taken 5 of the 6 drugs listed, at various times to help deal with Chronic Fatigue Syndrome. On several occasions, I took some of them at the same time. You may ask, which ones? – It makes no difference. All of them can be dangerous, if not taken properly. Even when taken properly, and under the care and guidance of a doctor – there is a big risk involved.

Doctor’s are human – they make mistakes. How many doctors did Heath Ledger see, in order to get all of those prescriptions? Want to know how many I saw, in order to get mine? No fewer than 4. I could not be trusted to remember every single drug I was taking (my memory wasn’t capable – and I could never remember to write things down). Doctors, don’t always read charts provided by other doctors. I was the one that was ultimately responsible for my pill taking regime.

Want to know why I now choose not to take pills for Chronic Fatigue Syndrome – I am terrified of ending up the same way that Heath Ledger ultimately did. I have come close (with an encounter of Ativan – when first diagnosed, and had absolutely no business taking a drug like that), and I am done with it (and all others).

I would much rather not sleep, than take something for a problem, that will eventually sort itself out.

It’s unfortunate that this has happened to a great actor of our time, it saddens me to think about this loss – but maybe there is something that we can all learn from this.

For me at least, I know that my choice to not take anykind of drug to help me sleep – is the right one.

Picture Source

Post from: Blisstree

The Heath Ledger – CFS Connection

I subscribe to the school of thought that if something you are doing or taking is causing a reaction – then you are on the right track.  Be it a positive reaction or a negative reaction.  Any reaction is encouraging.  I know that many people will disagree with me (I only have to read comments on certain posts to know this to be true).  But I want to know why you disagree.

Enlighten me!

Picture Source – Flickr .adriel 

Post from: Blisstree

Reactionary – Tell me what you think

Recently I wrote a post about a drug called lyrica, that that had an overwhelming response of people chiming in, to talk about the side effects that they are experiencing. So many comments, that I felt it was necessary to cut off that section for the post. However, the response prompted me to think about whether we have any idea what the drugs that we take are actually doing to us.

Take my example, when I was diagnosed with CFS, the only thing that really helped me at all was long term antibiotic use. While I have no regrets for that treatment (I went in with my eyes wide open), it did get me to a point of almost good health. I now have a lot of problems with respiratory illness. Illnesses that are treated with antibiotics. Antibiotics that no longer work for me, and so I have no choice but to search for alternative treatment.  Alternative treatments, that I am glad are available to me, even though my insurance will not cover them.

However, I wonder how many of us know exactly what the drugs that are being prescribed – actually have the potential to do . By this, I am meaning the not so great stuff.  Drugs are not always the answer. I think I have found a way to prove that statement.

I found a quiz, where you match up the drug to the side effects. The answers may surprise you. I thought I knew a lot…but I only scored 5 out of 10.

The quiz can be found here, in one of my very favorite magazines, mental floss.

If you decide to take the quiz, I would be interested to know what you thought and/or how you did.

**Image Source – boingboing

Post from: Blisstree

The Popular Drug Quiz